I'm not sick but i'm not well

The diagnoses:

This marked the beginning of a lengthy diagnoses. Blood test results showed up all healthy and at normal ranges (lymphoma cannot be detected by blood), ultrasound showed a few small clusters of lumps. Next steps were to undergo a CT scan to provide more detailed information. The CT scan showed clusters on the neck and some around my chest. I never get used to tunnel scans, I close my eyes and pretend that I’m on a beach tanning.

I never get use to tunnel scans, I close my eyes and pretend that I’m on a beach tanning.

I was then referred to the Peter Mac Cancer Centre and of course I knew I was in the best hands. At this stage I still felt like I had a 50/50 chance of this not being cancer. The physician explained to me that’s there’s no way of telling for sure until we can an accurate biopsy. He explained to me given the results of the CT scan it could be a stage 2 Lymphoma of some sort as it’s all contained in the upper region and that the itchy skin could be a sign of lymphoma (surprise)! He also mentioned the possibility of Sarcoidosis – another serious immune condition.

Throughout the weeks ahead I underwent numerous checks (and to help rule out other cancers) – nasal and throat assessment, mammogram, ultrasound on thyroid, fine needle biopsy (unable to determent results), a PET scan and the finally a core biopsy.

Getting the core biopsy was a rather intense experience (but less painful than the dentist in my experience). The doctor took longer than expected as he had to craft his way around my artery and was selective with the sample of tissue taken. I’m glad they had the radio on as it was a great distraction listening to Blondie and talking to the doctor and nurses.

Finally came 21 July and I was given the results of the core biopsy and they were able to confirm that I indeed had Lymphoma. The next day I saw the Haematologist and he was able to inform me of the exact diagnosis

–‘Classical Hodgkin lymphoma stage 2, type A, unfavourable’.

Even though I knew the outcome would most likely lead to this, it was only until I got this confirmation it then hit me. For four days straight I was shaking and I knew that I needed to process my emotions in order to get into a better mind frame. I wanted to hide away and ideally would’ve loved a small getaway before treatment started – but you know COVID times. I had a lot of good support around me – even though it was somewhat a bit eery to receive ‘get well’ gifts while feeling ‘well’ – it really did help feeling loved and supported by ones that mean the most to me.

Treatment planning:

The Haematologist explained the different treatment pathways, and in particular two:

1. [ABVD] 6 months of treatment
   - with a 90% success rate, a less aggressive treatment (slight chance of radiotherapy)
2. [BEACOPP & ABVD] 14 weeks short aggressive
   - treatment 95% success rate (less chance of radiotherapy).

Both good choices but ideally best to avoid radiation around main organs such as my lungs and heart.

At first, I thought the less aggressive treatment would be best as I wanted to be at less risk of infections, but at the same time I liked the idea of being able to complete the treatment before the end of year. Either way I was happy for the group of doctors to have their meeting to discuss my case and get back to me about their opinion.

– The nurse was also there to give me more information and her contact.

I was also given the option of some fertility care – freezing the eggs or an injection to put the ovaries to sleep. I did opt-in for the injection to stop my menstrual cycle and to help avoid early menopause (but nothing is guaranteed).

The nurse also put me onto the Lymphoma Down Under Facebook community page that has been a massive help.

A week later I got my treatment recommendation to go ahead with 2 rounds of BEACOPP & 2 rounds of ABVD (aggressive but shorter option). I was happy and had complete faith with the doctors recommendations.
At least I have a shorter treatment to allow me to recover quicker. I had to wait just under 3 weeks to begin treatment.

During this time, I could focus on my health, I had a lot of great recommendations from family and friends and some of them who had gone through their own battle with cancer. See Recommendations ↓

Treatment:

- 2 cycles of BEACOPP. (At the end of second cycle the objective is to have a clear PET scan).
- And 2 cycles of ABVD (if scan is all clear).

Cycle 1 - (21 days)

I tolerated relativity well despite a few notable issues such as feeling like ‘jetlagged’, dry throat, blurry in the eyes and weakness on some days. I ate well throughout though. Some days were difficult to last long periods on the computer for work, so I just had to take it easy. Some days I had brain-fog and had a few ‘brain-fart’ moments, for example I was in the kitchen and couldn’t think of the word for ‘dish rack’, I woke up in the middle of the night and the word pop right in!

• Day 1-3

  Chemo chair injection drip. 💺 - (Itchy stopped right away!)

• Day 8

  Chemo chair injection drip. 💺

• Day 9

  Booster injection.

• Day 10-12

  This was my low week and ended up in emergency as I had a high temperature and was neutropenia (no white blood cells). My hospital stay was a nightmare for me 😅 - I was missed placed, left with an awkward injection port for days, medication was delayed...(just to say the least).
  
  I was given the mandatory COVID test. I find it ludicrous that cancer patients are forced into a COVID ward. It was mentally exhausting being kept in isolation – I’m sure the nurses thought I was losing it as I ate lunch and sang to my music.
  

• Day 12

  The hair loss begin! Most of my hair all fall out in the shower. I found olive oil helped the dead hair before cutting and shaving it all off at Peter Mac.
  
  

• Day 18

  I attended the ‘Look Good Feel Better’ workshop via zoom. 🥰 The workshop covered ‘Wigs and Headwear’ and ‘Skincare and Make-Up’.

Cycle 2 - (21 days)

My second cycle of my treatment was fairly similar to the first, but worse with dizziness and other side effects.

• Day 1-3

  Chemo chair injection drip. 💺

• Day 8

  Chemo chair injection drip. 💺

• Day 9

  Booster injection.
  Had a blood transfusion due to low haemoglobin (red blood oxygen).
  

• Day 12-15

  Went into emergency again, though this time I was more prepared and got my injection port put in my top wrist instead.
  I also had a blood transfusion for platelets. – I had no idea that the colour for this transfusion would be yellow 😮. My aches were also worse this time around and one day couldn’t barley walk or stand.
  
  

• Day 19

  Had my PET scan check-in. Result was clear – In remission! 🎉🎉🎉
  

Cycle 3 - (28 days)

I had my lungs tested at this stage and results showed a decrease in my lung function due to toxicity. Therefore, the bleomycin drug was removed from my treatment.

The doctor also changed the booster injection to a more frequent injection that’s more quicker realising but short lived. This approach makes the white blood cells come back quicker and helps avoid going into emergency.

• Day 1

  Once again, back on the chemo chair for hours on the drip. 💺
  

• Day 7

  Another blood transfusion due to low haemoglobin at 75 level.
  
  

• Day 7-11

  Booster injections.

• Day 11

  Left hand pins and needles.

• Day 15

  Chemo chair injection drip. 💺

• Day 21-25

  Booster injections.

Cycle 4 - (28 days)

Side effects got worse as cycles went along - taste buds, pins and needles in hand, inflamed throat… and during my low week, dizzy, tiredness, brain fog and shortness of breath. My eyelashes started to thin out at this stage.

• Day 1

  Chemo chair injection drip. 💺

• Day 7-11

  Booster injections.

• Day 15

  Last day in chemo chair injection drip. 💺

• Day 21-25

  Booster injections.